Do you ever have times when you question whether what you're doing is having any effect at all?

[sphil]

Am going through a very down period about DS2 atm and need some wise words. Bear with me - this is likely to be a long one...

As some of you know, we're doing an ABA/VB programme with DS2 at home (about 18 hours a week). Within the programme - ie when he's at the table in the playroom - he's making good progress. But the amount of stuff he learns in there that he then uses in the wider environment is tiny. We seem to have been stuck at the single word request level for ages - attempts to get him to use two words have largely failed so far. He just uses the minimum amount of speech to get what he wants and isn't in the slightest bit interested in doing more. He resists anything outside the playroom that smacks of 'testing' - even though he's perfectly happy to work for long periods at the table during programme time. And I've just started thinking - what is the point of him knowing 200 names of animals, foods, vehicles etc if he never uses them in real life? We do quite a bit of Natural Environment Training in our programme (but maybe not enough or we're doing it wrong?) Our supervisor at Growing Minds seems to think it's a bit early for spontaneous comments atm and we should concentrate on requests. But DS2 only likes a handful of things, he can ask for them all already and so we're stuck. It's exactly the point we got to in PECS last year. It's making me wonder whether I'm too stuck on speech and we should be focusing more on other things.

I suppose, if I'm really honest, I've been guilty of a secret hope that DS2 would be one of those children who would make really rapid progress with ABA - even 'recover' . And despite the fact that he's come on a long way in the last ten months the fact remains that he is still severely autistic. That doesn't change, iyswim. He can 'know' lots of stuff but he's still autistic. It doesn't help that the severity is hidden from most people because he's so compliant, cheerful and flexible. When I take him into m/s once a week he's better behaved than many of the children in Reception - but he can't do ANYTHING that they can do.

Bugger bugger bugger

Having been a bit intense on this thread but before I go to bed I'm just going to use this thread to say that you get troughs but that's often followed by nice surprises.

I took ds1 to the SN dentist today- was dreading it because well it can be a nightmare. Anyway he went into the dentists clinic for the first time ever. Poked around her room, looked down her tubes and opened all her cupboards. Then she started trying to look in his mouth. He was standing up so he insisted on sitting on the dental chair then sat with his mouth wide open long enough for her to check all his teeth (I had to tell him she'd finished). So for the first time ever ds1 has opened his mouth to let a dentist examine his teeth.

This ability comes back to ds1 having learned imitation of course - so one new skill can have far reaching consequences. Honestly I never thought I would ever see ds1 open his mouth for a dentist.

Yes. In response to thread title. Been massaging dd's hands and arms and touching them to everything and doing sensory stuff for 4 bloody years. She still has no hand or arm function and doesn't know they are there. Been rolling her too for 4 years and she still can't roll.
Why do some kids with cerebral pasly gain some function and poor dd nothing

Well Yurt, I think we have to agree to disagree on that one.....as ever .

Remember though my Ds2 is not high-functioning - goodness knows what functioning he is - he has speech but he has learning difficulties also.

I wish you could go to the 2 day workshop - I think you would find it really interesting. One of the things I really like about Steve Gutstein is that he is so well read and up-to-date with all the research and it suits my academic type background and I think you would feel similarly.

Saker and luckylady, thank you so much for your responses and luckylady am going to email you now. The eye contact and gesture thing makes a lot of sense to me Saker, as he has to understand that speech is not just a key to unlock an action in an adult, but is an interraction with another human being. Good helpful advice, thanks so much!

But I don't think the current research into the deficits of autism (or what is driving the visible deficits) fits certain children- including my ds1. Which I why I find the RDI stuff a bit irrelevent for ds1.

Donna Williams sent a really good piece out on to her mailing list about the difference between children who develop language before about age 5 and those who develop it afterwards. I wish she'd put it on her website as I'm not sure it can be copied in its entirety. Most of the research into autism has been done on the first group and I think that the second group often have very different difficulties underlying their problems that need very different approaches. Gustein does tackle the problems faced by those who develop or are developing language pre the age of 5. I don't believe he's tackling the problems of those who do not fall into this group.

I'll re-read it and paraphrase later when I'm back home.

Well I guess there are plenty of children who would be classed as low functioning who are undergoing RDI now, so it will gradually become clearer whether this is an appropriate therapy for this group. Also I imagine if consultants were consistently finding failure with this group, word would get around. So we will see how it pans out. As a therapy RDI is continually evolving and I am sure that if Gutstein feels it is less successful in certain types of children he will make modifications.

I would be very interested in anyone using it with a non-verbal child who cannot imitate. And I'm interested in how non verbal children of 8+ get on with it.

There is one thing I definitely agree with him on. things like TOM fully develop through practice at co-regulated interactions. But I don't think you can practice those co-regulated interactions using RDI with a child who has for example totally shut down one sense (e.g. the visual sense) or who is unable to complete a sequence of voluntary movements without involuntary stuff getting in the way, or who has some form of catatonia. Those may not be 'dealable' with, and if not I think time would be better spent using therapies that will directly increase daily living skills and independence, and do that in conjunction with the tics and sensory problems etc that will probably always be there. 'normality' isn't the goal for those kids and following a normal developmental trajectory may never be even a remote possibility.

I'm sure there are some children who are classed as low functioing (especially in the younger 5 and under age group) who do have the potential to kick into a normal developmental pathways.

First though children with severe autism (esp non verbal) need to be properly studied in depth. The results of false belief tasks are pretty irrelevent to them.
Interestingly I did read 2 recent papers on low functioning autism today- both published in the last year, used totally different methodologies and both revealed surprising and unexpected competence in terms of social ability, flexibility and initiation of communication. Personally I think its because something different is going on with these kids that hasn;t been accurately described in the literature yet (although books by the affected individuals themselves are increasing all the time and tell a pretty clear and consistent story).

OK on my way to pick up ds3 I formulated in my own mind what my problem with RDi is for children like ds1. If someone who uses RDI can tell me how this problem is negotiated I'd be really interested.

Ds1 has 3 main problem areas. These are the 3 areas that are really holding him back.

a) Lack of expressive language. He has no way of expressing the thoughts that are in his head. All he has is PECS and a few signs. Neither can convey what he is thinking. Neither is flexible. The 'best' form of communication would be speech. An alternative would be typing. We're a long way off speech (if it's even attainable). He can point out odd words on the letterboard some days when he's really together. Other days he can manage first letters. many days he can't even co-ordinate himself to look at the letterboard.

b) Huge language delay. To an extent if we could sort out (a) I think a lot of this would be resolved. Certainly Lucy Blackman learned language as she learned to type aged 13. If Ds1 could take part in co-regulated activities either by typing or speech then I'm sure this would develop (and presumably if he could do (a) then we could affect (B) by doing RDI. It's much harder with just PECS and the odd sign and no sign of either typing or speech appearing.

c) This is the BIG one. Ds1 is affected every moment of the day by unwanted, involuntary movements. This prevents him doing almost anything without some sort of interruption from involuntary behaviours. These behaviours are not under any sort of self control. These prevent him from taking part in master-apprentice type co-regulated behaviours, because even if he sees and can see what he 'should' do if he can't get his body to behave then he can't join in and regulate himself. These behaviours/tics/fleas appear to be very common in people who remain non-verbal/severely autistic- even if they develop typing. What you do find when they develop typing and can begin to express themselves is that they outer behaviour is not a reflection of their inner thoughts. The causes of these unwanted behaviours may be different between individuals but they have the same effect of preventing access to joint behaviour. How does RDI get round that? It really isn't something that can come under voluntary control. The non-verbal book writers differ in the difficulties they describe- but that is something they are all consistent about.

If we could get c) and to a lesser extent a) under control then I could imagine that RDI would get us somewhere. But I don't see how we can use it when so many of ds1's responses are not voluntary.

Dr Gutstein always maintains that language is more of a barrier to RDI than a help. He says it is much easier to work with non-verbal children. Certainly I can see his point when working with Ds2 ? goes something like this

• I pass him a piece of washing to put in the machine, he puts in it in,
• I pass him the next piece, he reaches out for it, then stops as a thought strikes him ?what will it be for tea??
• ?sausages?, try to pass him it
• a thougthful/dreamy look comes over his face (common when Ds2 thinks of food? ) ? and beans, and mashed potato?
• me ? ?oh, here?s a sock?
• ?where?s Daddy??
• ?at work?oh no I?ve dropped the sock?
• picks it up and carries on for a minute ?what will it be for tea??
• ?I think you know?
• ?sausages?
• I nod (that?s not good enough ? Ds2 isn?t really sure what a nod means)
• ?sausages, it will be sausages won?t it?
• etc etc

Language can get in the way doing RDI. If you think that RDI starts by taking the child back to the beginning of development, speech is not important early on ? the neurotypical child learns a lot of other communication skills before they learn language and in fact if those skills are not in place then language is often meaningless. Many high functioning children/Asperger?s children who have good language are not much fun to have a conversation with because they have not learned any of the other rules of communicating.

If you think of typical development, many children can?t express what?s in their head in language until 2-21/2 but look at a NT one year old and they are communicating much better than most autistic children. It?s one of the things I find so depressing about going out and about in the real world having done RDI is that you see how well NT children do it.

Now I don?t know whether it would be necessary to try and teach language at some later point in the program or whether it really would come naturally, but certainly in beginning RDI, there is no prerequisite for language. In fact in some extreme cases they recommend that you wear headphones to make it clear to your child that they can?t just talk at you the whole time without regard for anything else.

I have no experience of the tics thing but I am sure that it is something that they will have come across just because of the volume of children doing RDI so if you were actually considering it as a therapy you could make sure you had a satisfactory answer before beginning. I?m guessing here but I suspect in the States they would not think it is really part of the autism but rather a co-existing disorder? With RDI they recognise that there are many co-existing conditions which can cause problems with the RDI and they say that you should try and address them separately but alongside the RDI. So Ds2?s motor skills (or lack of) are a big problem for us with RDI ? it is hard for us to find activities that he is competent in and also when he is doing some things it uses so much of his effort and concentration that he is unlikely to to have any attention left for emotion sharing etc. However we have been able to find things that get round this. In the meantime we do OT etc with him to try and help improve his motor skills.

(In fact Ds2 also has a bit of a similar thing in that he can just phase out halfway through an interaction and stare out of the window. It seems to be a sort of sensory overload. When he does we just stop and wait for him to rejoin us. It?s been interesting to see that the more RDI we have done, the less he does this in interactions with us although I think he still does it more at school.)

I presume that the involuntary movements interfere with your Ds1 in any type of therapy ? ABA, school etc. So you might argue that they are not more detrimental to his likelihood of success with RDI than other therapies. If you worked with a consultant it would be their job to help you find ways around it.

Sorry I am aware that is not a particularly satisfactory answer to the problem of involuntary movements ? as I say I have no experience of it and obviously I am no RDI consultant. However if this is more than a ?hypothetical? question, and you are wanting to consider RDI seriously than I could make some enquiries and see if anyone has any answers.

Thanks for your detailed reply. Food for thought.

The thing with ds1 (and others like him though) is that his receptive language is way above his expressive- he's stuck at the level he is because he has no way to express the thoughts (and without doing that will never fully develop language imo). DS1 is actually pretty good at communicating and tries sharing with us all the time. At a level that is more than expected . And he tries hard but lack of flexible expressive language does screw him. So for example he came tearing out of the front room into the kitchen shouting 'ay ay ay', grabbed me and dragged me back to the front room to show me something on the TV. BY then the TV had moved on- cue loads of screaming and me trying to guess what it might be. Eventually it occurred to me that it was a local programme and just maybe there had been a picture of his favourite bridge on screen. I checked it out- yes it was. With speech or typing that interaction would have passed off easily. And those sorts of sharing moments occur all the time.

I suppose I'm saying that looking at the RDI stages he's at he's actually doing quite well in RDI terms, BUT he doesn't have the practical skills to use those- by which I mean he has no speech. It's not that he's not developmentally ready for speech. It's just not there or possible for him, in the way that it isn't for many children with say CP. So something needs to teach him speech or an alternative-writing/letterboards being the best alternatives imo (although way behind speech in terms of usefulness). In all my readings of RDI I haven't seen anyone using it to actually teach speech.

Yes definitely these are co-morbids. The motor tics/catatonia/sensory processing (whatever it is) that is interfering with voluntary behaviour is very severe in his case. As it is in all the people I've come across who have remained non-verbal. And I agree that's not really autism. So I guess my point is that whilst I can see that RDI would address the autism, autism is by no means ds1's biggest problem. The co-morbids are far far far more of a problem than autism for him at this moment in time. If we could find a way to address those, then it might make sense to work on the autism. But to be honest if we addressed those he'd be instantly high functioning! (At which point of course it would make sense to do RDI and fill in the gaps that he had missed from not having access to lots of co-regulated interactions). When GM viewed our videos Steven's response was 'he's like a regular kid that just can't talk' and I know what he meant. It's the co-morbids that are the problem for him, not the autism. I suppose that's why he was missed at 2 and why we were told he definitely wasn't autistic. He was pretty good at all the non-verbal stuff, but because the speech didn't come (which was OK at 2) he didn't progress.

At the moment we're doing a cross between 'informative pointing' and 'halo' in the style of ABA The ABA is used because we're still teaching I would expect to drop that when ds1 has learned it as I think the activity itself will be rewarding enough. Informative pointing and halo aim to outpace the involuntary behaviour. They by no means address the autism (they don't aim to) - they aim to allow the child to communicate in detail with a person (a;lthough it has to be re-learned with each new person- big problem with it) over all the involuntary behaviour. there's a video link here. Scroll down to 'actual footage of chapter 14'. Dov is far calmer than ds1- (and his literacy is much better) but this is what we are currently doing.

I showed ds1 the video of Dov and told him that that little boy was the same age as him in the video and that he couldn't speak either but that he'd learned to type using a letterboard. Ds1 watched with huge eyes. Then when the video finished grabbed his letterboard and spelled out his name independently then pointed at the computer again. He hasn't spelled out his entire name independently much since. Although he's often got half way through it before something interferes. It was what I call a 'lucid' moment. BUt those are very brief. Usually everything is too much of a mess and too confused.

I am interested in how RDI deals with the co-morbids. I know they're common but I'm not sure they're often as extreme as they are in ds1's case. The other children I've met like him have all been non-verbal, or unable to converse or use speech at all meaningfully. These are serious rather than hypothetical questions, but we won't be getting a consultant (can't afford one). I would remortgage (although I think we're at the limit ) for someone who had worked on getting older non-verbal children typing.

Sorry Sphil I've sidetracked your thread....

It's worth watching rosh hashana as well. This was quite early on later videos show him working without needing the arm support on the leg/arm.

ON the Halo website in the members area there are some amazing videos. Of children as wild as ds1 transforming to being able to do this typing. I just did some with ds1 just now and his point has become much firmer and more accurate.

Also worth noticing that they're talking to Dov at normal speed- which is what we do with ds1 now. The majority of the time he understands.

Don't worry - I'm fascinated! Particularly in the involuntary movements issue as this seems to have become more of a problem recently. Incidently Yurt, did you notice this was less of a problem with your DS1 when he was on Mike Ash's supplement regime? My feeling is that DS2's 'tics' have worsened since coming off fish oils a fortnight ago.

Great news about the dentist btw! DS2 was the same last time we took him - and all down to learning to imitate. However he didn't quite keep his mouth open long enough, sadly for poor dentist's fingers.

Yes sorry Sphil, I hope you don't mind - we can start a new thread if you want but I sort of felt you had got what you wanted out of this one else I wouldn't have gone on .

Yurt ? RDI is different now from probably what you have investigated in the past in that it has been broken down into very small objectives so that there are hundreds of them! Rather than just working on one whole stage at a time you work on individual objectives within that stage. Most of what I know about RDI is the early stages ? so I don?t know what the approach to speech would be. It is possible it is included in later objectives but I haven?t seen these and as it hasn?t been a problem for us it is not something I have investigated. Again I?m sure I could find out with a few questions on the discussion boards. However I think that lack of speech is not really seen as a direct result of autism, rather as a co-occurring condition so it maybe that it would be more appropriate to address it separately at a stage when the child is developmentally ready. However don't quote me on that as I don't know the official line.

From things you have said about your Ds1 in the past, it would seem to me that he doesn't yet have all the early stages of NT development mastered. For example, the thing about him coming home and panicking because the car had moved shows a lack of ability to think flexibly. No NT child would do that at any age. Equally something like having to take him out on reins to prevent him running off shows he is not really co-regulating with you.

You would probably find that your Ds1 had already mastered some objectives within each of the first stages but there were a good number of gaps also (for example one of them that made me think of your Ds1 and his window smashing / fence climbing, is ?you feel wary about taking actions that may be dangerous to yourself or others? ).

In terms of needing to learn imitation etc before undertaking RDI you will be interested to know that some of the earliest objectives in the foundation stage cover this as it is something that a child learns early in their life and is needed for other skills to develop. Examples of objectives in this area would be: ?you imitate your partner?s actions when requested to do so?, ?you observe your partners to learn how to do new things and use new tools?. So I still would disagree that you need these skills in place before starting RDI. RDI is starting at the very beginning of development so I think you could start with a child that could do nothing which would be the equivalent of a newborn baby and work through. The nice thing about having a consultant is that it?s their job to worry about how you teach these things and to judge when you have mastered them.

In terms of money, you might be interested to know that I think there is at least one person in the UK now who is funded by their LEA to do RDI. Plus I know of someone else who is applying to their PCT (which will be interesting). I think gradually as the therapy becomes more popular, it will become easier to get funding.

Sorry cross posted with Sphil and Electra as I was on so long writing my last post

Electra - putting stuff in a washing machine is not what you have to do with RDI - you do what is appropriate for your child at a level at which they can do it. In some cases they just start with the parents rocking the child on their knee and with a target of achieving that for 30 seconds. And in a way if you can get them to do stuff for ABA I can't see why you can't for RDI. Also I have mentioned in the post to Yurt that RDI does teach imitation as an objective early on.

I know when ABA was first introduced there was some research done. Has anyone ever followed up the kids that it was done on into adulthood and what the outcome was compared to children who had no therapy or different therapies?

I really agree with all of that electra and you've said it far more concisely than I could

This is a blatant plug, but I very occasionally blog and this post I wrote today about events that happened a little while ago sum up about Ds1's progress and a bit about his speech now, so I think it ties in with wondering about how things are progressing.

leftbrainrightbrain.co.uk/?p=709

Oh I cross posted too. How do they teach imitation? I know that when we tried before (we tried every way going to teach imitation) it didn't teach it as such - it seemed to be that the child would follow you - but it didn't say how. At that stage ds1 was using hand over hand. IIRC the 'observing partners to see what they do' wasn;t about teaching imitation. It was about basing behaviour on what others were doing around you. DS1 started to do that anyway as soon as he started imitating (well within weeks) and the things that get in the way of that are the co-morbids.

I don't use the reins at all in places such as Dartmoor now. Steven drew up a 'teaching to walk with mother' plan which we did once (it needed 3 adults) and he 'got' that in one 20 minute session. The reason he can;t do it in busy places is because the compulsions and other co-morbids get in the way. He can't walk down a street because his attention is taken by a letterbox or a window that he has to touch. This may be sensory- Lucy Blackman wrote about not being able to see something unless she had touched it. Removed from all that, in the middle of Dartmoor he is great. He can be dodgy if there are other people around as they capture his attention as well, but as soon as it thins out he is fine. Will walk at my speed and does it very well.

Ds1 frequently has to touch things and trace letters and numbers on shop windows on the way into town. I don't need to touch things, but I find I have a tendency to hyperfocus on something small in front of me and get caught up in thinking about its shape, or its colour if I'm standing or sitting and looking at it. If I'm walking I still focus on the small details, but obviously not for as long.

electra I think further to your earlier post (and from the experience of trying various therapies). If you have a severely autistic child- under the definition given by Donna Williams in the other thread I started - ABA can be a great way to teach basic skills. Once you have those skills then you have a whole load of other options open to you. BUt if you need someway to teach attentional skills and imitation then ime ABA addresses these most directly. (We did it in between 1 to 5 hours of ABA a week- we've never done more than 5 hours per week- I'm not saying that's a good thing, I'm just saying it shows that it can be used to focus on specific skill gaps).

Once we had imitation and to a certain extent some attention - then our options became far wider.

Yurt - I sort of feel that the goalposts are moving about a lot here because whatever I say, you say "oh but Ds1 doesn't do that because he is autistic but because of XYZ". I have thought from your posts in the past that he was severely autistic and that caused a lot of problems for him in his daily life. If you feel that he has now reached a point where he doesn't really have the core deficits of autism as defined by Steve Gutstein then I think you are right you probably don't need RDI, so I will stop going on about it .

Electra - I don't know enough about ABA or RDI to make a good case for RDI over ABA at the stage that your daughter was at. It sounds like you achieved a lot with her and stuff that I would be pleased to achieve with Ds2.